A huge thank you to all that participated in the event yesterday. It was a humbling experience to see how much support there is for our special kiddos. I have posted all the photos that I took yesterday and would encourage anybody that has more pictures to add to the album.. You can see them here.
The event is only 4 short weeks away. We are profiling different DIPG kids on the facebook page. Please check the page out, hit the ‘Like’ button and help us spread awareness.
If you are on the fence about registering, or putting it off for any reason, please do so by the end of this month. We have to order the t-shirts and the only way we can guarantee that you will get one is if you do register by July 27. We will order more than have registered, but it will be a guessing game.
The day is fast approaching (only 3 months away!) and you can be among the first to register. Tell your family, friends, and even kind strangers. Create a team, dress up, most of all figure out a way to have fun all while supporting the cause.
Long time no blog. Life’s good. Anna is growing up way too fast. Things happen. Apparently writing doesn’t.
If anybody is still following along, we will be holding a fundraiser event in Eagle Mountain, UT on August 17th. Think Tough Mudder meets Dirty Dash, but with an awesome kid friendly course as well. It will be a 5k “race” with 8 or so obstacles. You can follow along at https://www.facebook.com/MuddyCruddy (I’ll probably post more details there than here).
So it turns out that DIPG has struck again, and this time close to home. As in another person in the city we live in. I’m not going to dive into details as you can read her blog for yourself. I know that Steph found out about her yesterday and I just saw an email from a DIPG support group that I’m a part of. I’m sure any thoughts and prayers you can spare her way would be greatly appreciated.
Today marks one month since Rex’s 5th birthday. I want to send a huge thank you to all who donated to The Cure Starts Now in Rex’s name on that day. We raised $450 which will go towards finding a cure for DIPG.
To quote Notorious BIG, “Birthdays are(were) the worst days…”, but as the song quickly changes to “Now we sip champagne when we thirsty” life doesn’t always turn out that way. This is one of those weeks that seems to weigh heavy on my heart, mind, and soul. I would say that time does seem to help heal, but it also strains memories. That is a hard realization to arrive at. To think that the little boy who was once my entire world is now a (distant) memory. There are still constant reminders. So many things that we say and do came from or were established with Rex. We continue many of those things with Anna, but are loving the little person that she is becoming and spending time with her.
On the DIPG front this year has been pretty crappy. It seems that so many kids are losing their battles, more so than I remember since Rex’s diagnosis. Maybe that is because I was numb to a lot of things last year. Either way lots of kids aren’t seeing benefit from radiation like we had. I’ve said it before and I’ll say it again, SOMETHING HAS TO CHANGE! On the research front there seems to be some progress being made. Not in the form of a cure, but in the ability to grow and culture tumor cells and gain a better understanding of the makeup of this nasty disease. There will be advances made, I just hope sooner rather than later.
As we ‘celebrate’ Rex’s 5th birthday on Wednesday I want to honor him, and those other DIPG Angels, with a little fundraiser. This one is simple, and more about getting the word out. We’ll call it the “$5 for Rex’s 5th” fundraiser. Go to this link if you want to participate. If we can get a lot of people donating a little money each we CAN and WILL make a difference!
Thanks for the continued support – WE LOVE YOU REX, TO ETERNITY AND BEYOND!
Reflecting on the great things to come on this Easter Holiday. I am grateful for the Gospel of Jesus Christ. I can’t wait for that Sunday to come when I will be reunited with my beautiful boy. Days like today make me miss him so much, but also provide such a comfort as I know he will be with us once again.
When your child makes a new friend it is typically a happy time. Rex made a new friend this morning as Oliver Palmer joined him and the other DIPG angels. Ollie fought long and hard and was an inspiration to so many people. He touched more lives than most that live to be 8 times what he did. Please keep Ed and Stacy and Ollie’s siblings in your thoughts as the coming days are especially difficult.